Learning to accept an illness
How can we embrace citizenship in the kingdom of the sick?
Hello, dear friends. In Wednesday’s Field Notes, I asked you to vote on the post to write next, and the winner was “learning to accept an illness.” (The second-place went to “AI-generated kindness, so I’ll write on that soon, too.) I hope you find something useful here, and I’d love to hear your thoughts. To our journeys, Brianne
One of the hardest parts of getting sick is wrapping your mind around accepting it. No one wants to be sick. No one wants to transfer into this new, unwelcome mode. No one wants a new diagnosis. No one wants this kind of change.
Denial can be easier.
Our brains like the status quo. Change of any kind can feel threatening.
In a sense, it is your brain’s way of protecting you — at least, version of “you” that you loved and knew before you became ill.
I know me, and this is NOT me.
Except, now it is.
Susan Sontag famously wrote:
“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
When we find ourselves in the kingdom of the sick, how can we accept our new citizenship?
Why acceptance matters
Perhaps before we get to the “how” we should talk about the “why.”
Does it make a difference if we accept an illness or not? Why?
I believe (and studies show) that acceptance makes a great difference. It might seem counter-intuitive, but the best life you have in front of you now is only possible with acceptance.
That’s not to say it’s easy at all.
One woman I interviewed told me:
“I wish I would have known that the sooner I accepted the diagnosis, the easier it would have been to get on a real path to recovery; that there’s more to it than medication and therapy, mindset also plays a huge part.”
Here are two key reasons why acceptance matters:
Your illness itself benefits from your pro-active involvement. Your healing will benefit from you caring, noticing, and seeking the care, rest, treatment you personally need and working with clinicians to find the most effective path for you. Unfortunately, our medical system isn’t equipped to watch over you step by step. You’ll get the best results, and heal the best you can, if you are monitoring the treatment process and your reactions. This could mean noticing when your pill looks suddenly different during one refill and asking about it, or telling your doctor about a particular new symptom that started soon after a medication, or calling to reschedule the follow-up scan as your physician recommended. Until you believe and accept that you have the illness, and that there is something you can do about it (perhaps that’s a whole other post), it’s hard to get on board with attending to your own care.
Your perspective on your illness drives so much of how you feel — your thoughts create your feelings. How you think about your illness conjures up emotions like joy or loss, anger or gratitude. All of us, whether we are ill or not, experience life created through our mind. When you are in denial over your illness, it can stir up conflict — anger, resentment, frustration, emotions that are simply hard to live with day after day.
Imagine not fully accepting an illness:
How much harder would it be to make room for that follow-up appointment?
How much harder would it be to remember to take your medication every day?
How much harder would it be to talk to a someone who happens to mentions that they have been sick — with your same illness?
How much harder would it be to go to the doctor when a new symptom pops up?
How much harder would it be to ask for help?
Moving toward acceptance
If you believe acceptance will help you, how do you move toward it?
Here are 3 ways.
Adopt small actions to address your illness; each act will signal your new identity to yourself. Your own actions shape your understanding of who you are. James Clear talks about this a lot in his book Atomic Habits. In this case, he’s addressing how habits shape your identity. For example, if you want to be a writer, start by writing 10 minutes a day.
“Every action you take is a vote for the type of person you wish to become,” he explains “No single instance will transform your beliefs, but as the votes build up, so does the evidence of your new identity.”
No one votes to be sick, but in the same way, I think actions can apply to your understanding of yourself as a person with this illness. As you make doctor appointments, join a support community, buy a book about your illness, begin taking medications, seek out treatment options, you are giving yourself evidence of your new identity and becoming more comfortable with it.
Perhaps it seems like the chicken-egg puzzle. You might think: But these acts are more difficult and angst-ridden until you reach the point of acceptance! Just take one at a time. Do the first one you can imagine doing. Then later, another one. It takes time.Meet other people who have your illness and who have learned to adapt and thrive.
There is nothing quite like the evidence of another person’s story to prove to you what is possible. We are story-driven creatures; we learn from how others have navigated challenges — both in practical guidance and in inspiration. As you tell more people about your illness, it often happens that they will recall other people you might want to meet, even people you already know, but didn’t realize they had an illness.
Frank Bruni, a New York Times columnist who experienced a loss of sight, shared lessons in his wonderful memoir The Beauty of Dusk from the people he met who are thriving with their own forms of blindness. One was Juan Jose, a diplomat from Mexico City who lost his sight fully in his thirties and not only learned to adapt, but viewed the challenges as opportunities to strategize and figure the world out anew.
“I never saw it as a burden,” Juan told Frank, who wrote about this in his wonderful book The Beauty of Dusk. “I saw it as a characteristic. You might or might not be happy with how you look. You might wish to be taller or thinner. But you are what you are. To me it was exactly that.”
Like Juan, new acquaintances can serve as invaluable sources of advice on your particular illness but also on mindset and emotional experience. They’ve been there ahead of you. They have some ideas of what to expect, even as bodies are unique and may respond differently.
Frank reflect in The Beauty of Dusk on what he learned from Juan:
“Two aspects of his response to his circumstances had special resonance for me after my stroke. They played a particularly helpful role in my very pale echo of his experience. One was the repurposing of trauma or upset as a badge of honor, the turning of the statement ‘I can’t believe what I’m going through’ from a complaint to a boast, from ‘I can’t believe what I’m being put through’ to ‘I can’t believe what I’m managing to get through.’ The other, which had some Venn diagram overlap with that, was the reframing of difficulty as dare, the conversion of a predicament into a puzzle that you’re solving, a seminar that you’re mastering, a curriculum of new information and new skills. Juan Jose saw an ‘adventure’—his exact word for it—where he could have seen an ordeal. I had instinctively begun to do the same before I met him.”
Read stories of people who have an illness.
You might not be ready to actually meet other people with your illness. You can still absorb stories through books, podcasts, social media groups, and movies. You might also find help, solace, and inspiration from books that are not about your particular illness, but another one, or a different challenge altogether.
I draw inspiration from Suleika Jaouad, who had leukemia in her 20s and recently relapsed in her 30s. She writes about her cancer, treatment, creativity, and reflections in her lovely newsletter and community Isolation Journals. She brings a level of care and thoughtfulness that give me hope and energy.
One word of caution: Sometimes memoirs become bestselling, well-known memoirs because the story is so dramatic and catastrophic. Sometimes people you meet with your illness are suffering tremendously.
Just because one person had, say, a near-death experience or went through the extreme case doesn’t mean that you will. It might not be helpful to read about a tragic outcome, either, especially early on in your understanding of your illness. One thing you can do is ask a trusted friend to look over a book, listen to a podcast, or skim an online patient group first, and let you know if they think it would be genuinely helpful to you.
Life is a spectrum, whether in the kingdom of the well or the kingdom of the sick. Lean into where you find hope.
Your own mindset
In the end, acceptance is a mental process. It takes time. It’s up to you and your thoughts. It’s made more difficult from all the messages we get from our culture about the worth of people connected to their wellness and productivity. It’s not easy to accept citizenship in the kingdom of the sick, even though we all will be there sometime.
Some people call it a decision, to decide to make the best of it, to accept life might never be the same, and accept that what is ahead and different is worth embracing, too. Maybe it is a decision, but I also think it is not a on-off switch, a fork in the road that is chosen once. It’s more like a long spectrum or an evolution. It’s a decision that is often remade, again and again.
One last thought from Frank, who recalls the mantra of his college psychology professor: “Life is about adjusting to loss.” In the end, accepting an illness is also accepting the loss of health in that area. It’s accepting loss — maybe temporarily, maybe forever — of what you used to be able to do.
Frank elaborates: “The challenge of life, present for most of it but more dominant in the second half, is adjusting to loss or, more specifically, developing the judgment and grace not only to accept its inevitability but also to recognize that it’s not the only trajectory, that there are many ways to meet and measure it and that there are consolations, including all that remains. Cherishing those leftovers—those holdovers—is the key to thriving, and sometimes even to surviving.”
Thank you. I realised while reading your article that feeling “this is not the me that I want” is partly ableism. We think, because we are taught, that sick people or disabled people are some different order of being. (This is changing but not fast enough.) incorporating ‘sick’ into my identity seemed impossible because I had an internalised belief the two were mutually exclusive. Then I woke up with some symptoms and a provisional diagnosis - a ‘maybe’ and yet I still felt like me, still liked reading and cats and history, still wanted life... it was confusing and would have been easier if I’d been briefed on how each of us will cross into dual citizenship at some point. It was feeling like there were only two options, ‘healthy’ (acceptable) or “broken” (unacceptable). Ableism is like glitter, it gets everywhere.